Today, the doors opened wide. The warm brocade of March sun spilled in, and shoppers shopped. But mostly they celebrated with champagne and sangria and macaroons in hues of Marrakesh. The grand opening of ibu was also a birthday — nine months to the day from when Susan first saw this raw and beckoning space at 183 King Street.

And now the renovation is complete, the shelves stocked with gorgeous global threads and beaded jewels from artisans of distant lands, and a business is born. This business of embracing beauty, of draping oneself in authenticity, of dressing in story and tradition. The business of “wearing the change.”

Oh yes, the change. Before she was a business owner and leader of the growing tribe of fans and customers whom she dubs her “ibu allies,” Susan was my ally in the journey that birthed this blog–our joint journey as daughters venturing through the foreign land of ALS. Wear the change.

As those reading this know, A Life Still has been still for quite a while, all but retired after having done its job of giving us space to chronicle and reflect on our parents’ illnesses and, four times over, their eventual deaths. But in the interim, Susan has been anything but still, and far, far from stagnant. In creating and birthing ibu, she has woven together her father’s spiritual and intellectual depth with her mother’s passion for the tangible and stitched them with her own love of travel and writing, not to mention her simply fabulous sense of style, and here we are today, walking into a King Street storefront, a marketplace that makes a difference in women’s lives — both the women who created these goods and those of us lucky enough to wear them.

Bill and Wylodine would have been so proud of their radiant ibu gal. A woman of substance (the definition of “ibu”), a woman who wears change more elegantly and boldly than anyone I know. An ally and artisan, a woman of the ever-changing cloth.

The shop is open, folks. Much is in store. A life still. Artfully loaded shelves. A lot (of) silk. A luminous space. A lovely Susan.

It was the last day of our trip together. My father’s luggage and mine leaned on the curb waiting to taxi to the airport, red and green as Christmas. Heading home.

Five years ago, my father knew something was wrong with his wobbly legs, but he didn’t know that ALS had claimed them. He asked me to accompany him on a trip to Europe since my mother’s health was failing and my brother, on sabbatical leave with his family, had invited Dad to join them. Forty-five years earlier, we had all spent a sabbatical year in Goettingen, Germany, and so we returned to season some of that history and pass it on to the next generation. While we were on the continent, my father wanted to return to his favorite haunts in Switzerland and relish the beauty he had loved most in this world.

On the train between Lucerne and Munich, or somewhere in between, our relationship found a new equilibrium – no longer that of a father and daughter but of two pilgrims navigating life’s unpredictable road. He learned to lean on me, as once I had leaned on him. We learned to laugh at his tales of getting stuck on the floor of the train station after re-tying his shoe or getting stuck in the tub without the strength to rise. We learned to talk and risk saying what we meant and let the differences stand.

Only a few days after our return, he was told that was to be his last trip. But not his last journey. Ahead was the completely uncharted path of dying, and living while dying.

I decided to make a travel log of this final adventure, along with my dear friend, Stephanie, who was accompanying her mother on the gravelly road of ALS. We began this blog together, and I presented a note about it to my father as a Christmas gift, 2009. In it, I promised not to invade his privacy, detail medical conditions, or air family matters. I vowed not to try and interpret his experiences, but to reflect upon my own. I told him that while I knew the disease was thought to be dreadful and even cruel, I wanted to hold the possibility that light could yet be found in the days ahead. That I would be there for all of it, for the dreadful part, yes; but also for the ways it might change, shape, sharpen our living of these days; how it might endear us to this here and now. His eyes became wide, as though imagining for the first time the chapter ahead of him not a curse, but an adventurous conclusion to a rich life.

This Christmas, we came to the end of that road. I have tried to be faithful to the practice I set up for myself, as he was certainly faithful to the adventure, opening himself each day to whatever life presented. Even opening himself, at last, to the kindness of death. Through these reflections, I held ordinary moments up to the light and found that they became prismatic. They lodged themselves in me with a certain staying kind of grace.

Now it is time to let words stand still and hold the sounds of silence. Stephanie and I clinked glasses on Christmas Eve over a beautiful dinner, her daughters radiating their young loveliness around us. Her mother and my father no longer communing at this table of goodness.

But both of them alive in us, in a powerful, mangered way. Both of them still shaping our ever-widening capacity for joy, for life. Both of them, luggage shed, carried in our bones like a river of light. For, like all who are cherished in a living heart, theirs is

“At the hill’s foot Frodo found Aragorn, standing still and silent as a tree; but in his hand was a small golden bloom of elanor, and a light was in his eyes. He was wrapped in some fair memory: and as Frodo looked at him he knew that he beheld things as they had been in this same place. For the grim years were removed from the face of Aragorn, and he seemed clothed in white, a young lord fall and fair; and he spoke words in the Elvish tongue to one whom Frodo could not see. Arwen vanimelda, namarie! He said, and then he drew a breath, and returning out of his thought he looked at Frodo and smiled.

`Here is the heart of Elvendom on earth,’ he said, `and here my heart dwells ever, unless there be a light beyond the dark roads that we still must tread, you and I. Come with me!’ And taking Frodo’s hand in his, he left the hill of Cerin Amroth and came there never again as a living man.”― J.R.R. Tolkien, The Fellowship of the Ring

Good-by to the life I used to live,
And the world I used to know;
And kiss the hills for me, just once;
Now I am ready to go!

“Farewell” by Emily Dickinson

Memorial Service
Monday, December 16 at 2:00
Mountain Brook Baptist Church
Birmingham, Alabama

Andrew kept a certain dark suit aside. Yesterday, he dressed him in it. He dressed my father in the suit, and in a particular shirt he had given him, an elegant tie, and the eternity cufflinks that my father loved. Across my father’s legs, he laid the lap blanket I had woven for him.

Andrew put on Beethoven’s 9th Symphony and let it pound through the house. My brother drove down, opened the door and entered the room as the chorus rose to it’s most joyful, Joyful. There, in that room that had been home for the last five years, my father lay in peace.

I don’t want to get to the end of my life and find that I lived just the length of it, said Diane Ackerman. I want to have lived the width of it as well.

My father lived the length and the width, the height and the breadth of this life, I want to say. He lived every bright corridor and dark corner without bitterness or regret, but with a grateful spirit, with eyes that lit a room, with a presence that roared. He lived with the music of his mind, making of it a symphony of gladness and joy.

And then, as we all are asked to do, he stepped aside. In the quiet of his sleep, breath stopped. Life went on. He slipped out.

Mortals, join the mighty choruswhich the morning stars began;love divine is reigning o’er us,binding all within its span.Ever singing, march we onward,victors in the midst of strife;joyful music leads us sunward,in the triumph song of life.

A walk home in this afternoon light, holding my husband’s hand. Glory floats in the air; chimes chant the hour.

Calling my father from the early porch dark. More is lost, his world even smaller now. Closing in.

Packing to leave for Bangkok in the morning, for work, and life, and what I love. My world larger than ever with praise.

Going out. Going in. We move in two directions. Both swimming in the same light.

this, to you, dear father, as I go on my way ~

No, no, there is no going back.
Less and less you are
that possibility you were.
More and more you have become
those lives and deaths
that have belonged to you.
You have become a sort of grave
containing much that was
and is no more in time, beloved
then, now, and always.
And so you have become a sort of tree
standing over the grave.
Now more than ever you can be
generous toward each day
that comes, young, to disappear
forever, and yet remain
unaging in the mind.
Every day you have less reason
not to give yourself away.~ Wendell Berry ~

Twelve minutes before the wedding ceremony, my nephew Andrew emerged from a victorious Tennessee TV huddle – now a groom with a satisfied gleam behind his orange-rimmed sunglasses. He had waited for this: to show me what he had created out of the sari borders I gave him after my last trip to India. And there he was, striding up to me in sartorial splendor. Silk brocade that once floated through the lovely homes of Mumbai now fitted his lapels, lined his jacket, shaped itself even into a neck tie. He had envisioned it all, down to the Tennessee-orange socks, his own unique fusion of the Vols and the Vedic.

After the ceremony, the lovely meal, a dance with my brother who had officiated the nuptials- I walked out on the sprawling lawn in the early light of evening and called my father who was so palpably not there. My brother had ended the ceremony with my father’s words – ones the family knows by heart – and conjured his presence there in quiet benediction on the day. But now, as I heard my father on the other end of the phone, the golden tongue sounded disturbingly like a shovel chomping through gravel. I reported on the wedding, his son and grandson and great-grandson all taking their places in the circle of life. He tried to calm my fear about the chomping sound in his voice. I hung up and sat under the darkening sky.

Inside, the dance music was really kicking in now. Bridesmaids were flinging off their heels. Andrew and Sarah did dips and swings to Luckenbach Texas in their finery; he picked up the guitar and began to sing his own song. The littlest Hull pranced in the center of all the moving parts – at 10 months old he stole the floor.

I watched the last light crawl down into the wooded distance. In the wide-open evening, the chilling air, there on the spongy grass, I felt the turning.

It has been a year, today, since you held Mother’s hand as her life slipped out of your reach. You have taken that empty hand, in the year since, and applied it to the pen, writing down to the the last word your 7th book in these five long years of crumbling health, calling it your last. That right hand is the only portion of your body that still can articulate itself, which I find a grace, for it delivers words which your tongue can not. Your fingers cannot make it up to the bridge of your nose to adjust your glasses, or across the plexiglass to turn a page of a book. But if a pen is laid across their crib, you still can press a word into the paper, like you pressed your aching heart into her hand.

It is an amazement to see how much life is squeezed into what little you have left. When voice and movement and conversation are taken away, then, it seems, even more life comes flowing through the flesh of your palm. It ruffles the fur of a frisky friend, it strokes a baby’s leg, it empties the mind of its words onto paper, or sinks its feelings into another hand.

When I think of all the channels still open to me – legs that can fly down my stairs, a voice that bellows in the car, hands that snap and clap – I feel as though a mighty river is over-running the sluices. And then I look at you, that one right hand left to carry all the force of being, and I am in wonder. How much it still has to say. How far it reaches. How deeply it has learned to love.

About our blog

Susan and Stephanie, friends for 17 years, got the same news within months. Susan’s father and Stephanie’s mother have been diagnosed with A.L.S. Lou Gehrig’s disease progressively stills a life – muscles cease to work, speech fails, the body withers – while the mind and spirit seem to brighten in intensity. This is a journal of two women, both divinity school graduates, both living in Charleston, SC, both, at heart, writers, speaking into the Silence which grows around them. Observing, in moments small and ordinary, the way a life stilled is still a life – and often a luminous one.

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